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What is PDA?
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What is PDA?
The medical term for PDA is Pathological Demand Avoidance, explaining that PDA is marked by high anxiety due to overhelm from daily life demands that PDA'ers manage through avoidance.
PDA is considered to be a profile of Autism; however this is being debated, and many professionals, including myself, see PDA as a separate neurotype. A recent survey done by PDA North America found that around 67% of caregivers of PDA children felt that PDA is part of Autism and 33% questions this. The report also showed that 70% of kids with PDA also have ADHD. I strongly believe that PDA goes hand in hand with giftedness, which often goes unrecognised.
PDA is considered to be a profile of Autism; however this is being debated, and many professionals, including myself, see PDA as a separate neurotype. A recent survey done by PDA North America found that around 67% of caregivers of PDA children felt that PDA is part of Autism and 33% questions this. The report also showed that 70% of kids with PDA also have ADHD. I strongly believe that PDA goes hand in hand with giftedness, which often goes unrecognised.
Pervasive Drive for Autonomy and Equality
Even though it is true that PDA’ers struggle with daily life demands, there is a lot more to it. I prefer to see PDA from the perspective of having a Pervasive Drive for Autonomy & Equality. Each time a PDA’er loses autonomy or equality, their nervous system perceives this as a threat. This in turn activates the nervous system to change to survival mode, meaning that the body will go into fight/flight/freeze or fawn.
Autonomy = the right of a person to be independent and govern themselves. For a PDA'er, having the right to make their own decisions is crucial.
Equality = the state of being equal, especially in status, rights and/or opportunities. For a PDA'er to be treated with fairness is crucial.
PDA is considered a cumulative nervous system disability.Whenever someone’s autonomy or equality feels threatened, the nervous system gets activated leading to lots of different ways of trying to manage this activation. Starting with simple strategies such as distraction, changing the subject, excusing themselves or procrastination. These relatively innocent strategies are utilised until a demand becomes too much to deal with (too many demands have accumulated too many nervous system activations), which then leads to fight/flight/freeze or fawn.
It looks like this pyramid on the left, that was developed by the PDA Society. As people get older, the expression through behaviour is more nuanced/adjusted, however, in some people, their responses might could still look “bizarre” to the outside world. For example, someone has an outburst because someone cut the cucumbers the wrong way (true example from my own life,and yes, that was about me!).
Because the activation of the nervous system builds up, it can be quite confusing for the people around the PDA'er. Often a PDA'er is fine doing something one day, but then completely breaks down the next day. For example, a child happily saying goodbye to their parent in the morning on Monday, but then refusing to get out the car and screaming for an hour on Tuesday.
And anything, any demand in life, can threaten that autonomy or sense of control or equality. And because it is a cumulative nervous system disability, each tiny interaction between a PDA’er and someone in their environment, can trigger a major (panic) response. It is like an hour glass. The demands that are put in, constantly run through to the bottom part. Demand, after demand, after demand, tiny specs of sand run down, and only true autonomy and equality can turn the hour glass over to let some of these specs out. Most days consist mostly of “demand specs of sand” without true autonomy & equality…. And at some point, the hour glass runs empty. That is where the big responses (the red part in the pyramid) are observed. That can seem like they come out of nowhere! The demands that were placed into the hour glass were just too many to cope with.
And anything, any demand in life, can threaten that autonomy or sense of control or equality. And because it is a cumulative nervous system disability, each tiny interaction between a PDA’er and someone in their environment, can trigger a major (panic) response. It is like an hour glass. The demands that are put in, constantly run through to the bottom part. Demand, after demand, after demand, tiny specs of sand run down, and only true autonomy and equality can turn the hour glass over to let some of these specs out. Most days consist mostly of “demand specs of sand” without true autonomy & equality…. And at some point, the hour glass runs empty. That is where the big responses (the red part in the pyramid) are observed. That can seem like they come out of nowhere! The demands that were placed into the hour glass were just too many to cope with.
What do you mean by demands?
So, I have been writing about demands and the "D" in the medical term for PDA stands for demand. But what are demands?
Let’s first look at direct demands. Direct demands are requests or questions made by other people or situations – such as ‘put your shoes on’, ‘sit here and wait’, ‘pay this bill’ or ‘would you like a drink’.
Each time a request or demand is placed on a PDA'er, the PDA'ers nervous system perceives this as a threat, because A, if someone else expects something of them and shares these expectations, that automatically means they lose equality (someone is placing themself above me), and/or B, I might not want to do that right now, or I am busy with something else, or thinking about something else and I don't want to think about that question or engage with anyone right now.... so this is the PDA'er experiencing a loss of autonomy.
In addition to these more obvious direct demands, there’s a whole raft of indirect and internal demands, including:• Time – time is an additional demand on top of the demand itself• Plans – advance planning may lead to increased anxiety as the time/date for ‘the plan’ nears, but equally the intolerance of uncertainty that is a key factor in PDA may make ‘spur of the moment’ activities tricky …• Questions – the expectation of being required to respond to a direct question can be disablingDecisions – sometimes knowing a decision has to be made makes it a demand, or ‘options paralysis’ may set in if there are too many possibilities• Internal bodily demands – such as thirst or needing the bathroom• Thoughts/desires – internal feelings• Uncertainty – research from Newcastle University showed that intolerance of uncertainty is a significant factor in PDA, with PDA autistics needing to know and feel in control of what’s going on• Praise – this carries the implied expectation that the action will be carried out again or improved on next time, and so may not achieve the positive reinforcement that may be intended• Transitions – the demand to stop and switch what you’re doing and also the uncertainty around what may come next• Expectations – from others and of yourself• Sensory overload & sensory integration difficulties• Other people’s ‘energy’ and presence• Things we want to do – like hobbies, seeing friends or special occasions – so not just the things we might not want to do like housework or homework.
Then there are demands within demands – the smaller implied demands within larger demands (for example, within the demand of going to the cinema are the demands of remaining seated, responding appropriately, sitting next to other people you don’t know, being quiet etc. etc.).
And there are the many “I ought to” demands of daily life – getting up, washing, brushing teeth, getting dressed, eating, cooking, chores, learning, working, sleeping … the list goes on.
Demands will be perceived differently by different individuals, and response to demands may also be variable, but once you begin to look at life in terms of demands you can see how pervasive they all are and how difficult things might be for someone with a PDA profile.
• many everyday demands are avoided simply because they are demands. Some people explain that it’s the expectation (from someone else or yourself) which leads to a feeling of lack of control, then anxiety increases and panic can set in (not everyone experiences panic however, it can also feel like numbness, or anger/irritability)• in addition, there can be an ‘irrational quality’ to the avoidance – for instance, a seemingly dramatic reaction to a tiny request, or the feeling of hunger inexplicably stopping someone from being able to eat• the avoidance can vary, depending on an individual’s capacity for demands at the time, their level of anxiety, their overall health/well-being or the environment (people, places and things).
The important thing to remember is that only TRUE autonomy and equality in a life full of demands can fill their hourglass back up. If they don’t have true autonomy and equality, they will find other ways to get back in control, usually with less desirable behaviour.
Then there are demands within demands – the smaller implied demands within larger demands (for example, within the demand of going to the cinema are the demands of remaining seated, responding appropriately, sitting next to other people you don’t know, being quiet etc. etc.).
And there are the many “I ought to” demands of daily life – getting up, washing, brushing teeth, getting dressed, eating, cooking, chores, learning, working, sleeping … the list goes on.
Demands will be perceived differently by different individuals, and response to demands may also be variable, but once you begin to look at life in terms of demands you can see how pervasive they all are and how difficult things might be for someone with a PDA profile.
• many everyday demands are avoided simply because they are demands. Some people explain that it’s the expectation (from someone else or yourself) which leads to a feeling of lack of control, then anxiety increases and panic can set in (not everyone experiences panic however, it can also feel like numbness, or anger/irritability)• in addition, there can be an ‘irrational quality’ to the avoidance – for instance, a seemingly dramatic reaction to a tiny request, or the feeling of hunger inexplicably stopping someone from being able to eat• the avoidance can vary, depending on an individual’s capacity for demands at the time, their level of anxiety, their overall health/well-being or the environment (people, places and things).
The important thing to remember is that only TRUE autonomy and equality in a life full of demands can fill their hourglass back up. If they don’t have true autonomy and equality, they will find other ways to get back in control, usually with less desirable behaviour.
- Externalised vs internalised presentations A PDA profile presents differently in different people. Some individuals may have a more externalised or active presentation – where demand avoidance may be overt, physical, aggressive or controlling. Others have more internalised or passive presentations – where demands may be resisted more quietly, anxiety is internalised and difficulties are masked by, for example, pretending to be OK or focusing on pleasing others. Many may have a variable presentation, depending on other factors like how well they are managing at the time, the environment, the setting, their age and so on.
Equalising
One of the markers that sets aside PDA from any other Neurodivergent profile, is a behaviour called equalising. As explained before, if an individual doesn’t have true autonomy and equality, they will start to do things to get back in control, back to having autonomy and equality and therefore to feel safe in their bodies again.
PDA equalising behaviour (or levelling or balancing) involves automatic actions, both outward and internal, to restore a sense of control, fairness, and autonomy when they perceive a power imbalance or threat to their independence, driven by anxiety, not defiance. It's a nervous system response to "level the playing field" and can manifest as taking charge, challenging authority, demanding things, creating strict personal rules, or even self-harm, aiming to regain balance.
Examples are: • Controlling the Environment/People: A child may demand to be "in charge" of their parents, setting rules or deciding how activities must be done to feel safe.• Property Destruction or Disruption: Intentionally knocking over a sibling’s toys, or breaking/hiding a caregiver’s favorite items to reduce the power dynamic.• Competitive "Winning": Transforming everyday interactions into competition where the PDAer must win overwhelmingly (e.g., crushing a parent in a game or running much faster).• Verbal/Social Leveling: Correcting adults, challenging authority, using "rude" language, or interrupting to feel on par with adults.• Physical Power Struggles: Roughhousing or wrestling where the child aims to "body slam" or physically dominate the adult.• Defiance and Delaying: Refusing to follow instructions or stalling to avoid being controlled by demands.• "Sneaky" Tactics: Complying initially but then sabotaging the result, such as cleaning up, but hiding items in the wrong place or complying with something, but then knocking of the neatly folded washing off the table a minute later.
There are many ways an individual can equalise. And this “behaviour” is often mistaken for defiance, manipulation, lying and other wilful behaviour, whereas it also comes from a place of protecting themselves aka the nervous system.
There is a lot more to learn, but if you recognise your child in the above description, please reach out to see how I can support your family.